Silent but deadly

As killer viruses go, it's fair to say that hepatitis C hasn't really had the attention it deserves. Highly infectious and eight times more common than HIV in this country, it has been described as a 'viral time bomb' by at least one expert, but it hasn't - since its discovery in 1989 - had anything like the funding and publicity that HIV has, despite experts in the field calling loudly and regularly for both.

Nigel Hughes, at the British Liver Trust, says that it is possible to talk about hepatitis C in terms of an epidemic. 'Yet we hear very little about it. Estimates vary, but in the UK up to 400,000 people are currently infected with the virus, and numbers are increasing all the time.'

A stealthy and deadly disease, hepatitis C can do serious damage before any symptoms develop. Having entered the body through the blood stream, the virus makes its way to the liver, where it attaches itself to a hepatocyte, or liver cell. Ironically, it is the immune-system response to this invasion that is the probable cause of the resulting liver damage. In 10 to 15 per cent of infections, the immune system will clear the virus, but when it doesn't, scarring, fibrosis and then cirrhosis or liver cancer will eventually occur.

'For those with a persistent infection,' says liver specialist Dr Mark Thursz, from the Imperial College School of Medicine, 'the good news is that only 20 to 30 per cent will go on to develop liver disease.' The bad news is that treatment (a combination of interferon and ribavirin, with often debilitating side effects, of which more later) is being denied to some patients in the UK because of the cost. Hepatitis C progresses to cirrhosis or liver cancer very slowly, typically over 20 to 25 years, but as Thursz points out, 'left untreated, it will frequently end up with the patient having to undergo a liver transplant, which is a much more costly procedure'.

The official response to hepatitis C has, according to Dr William Rosenberg, a clinical specialist at Southampton University, largely involved the government putting its head in the sand. 'It just isn't a health priority for the government. They have, for example, chosen to believe the lowest possible prevalence figures, when there is plenty of evidence to suggest they should take notice of higher figures.' And despite National Institute for Clinical Excellence (Nice) guidance last October, stating that treatment should be available to everyone, Rosenberg knows that this still isn't the case. 'I've talked to colleagues around the country and even embarked on a small questionnaire survey, and the truth is that the drugs are only available for a proportion of the patients that need them.'

The shortfall in terms of both preventative measures and availability of treatment might be due to a perception that this is a disease that only really affects long-term drug addicts. But while the majority of those infected with hepatitis C are, or have been, intravenous drug users, the unfortunate truth is that hepatitis C is highly infectious, and injecting just once has proved to be enough.

Angela Narbey is a hepatitis C specialist nurse at Chelsea & Westminster Hospital who says she has a number of patients who have only experimented with drugs very briefly. 'Still, there's a huge stigma towards it,' she says, 'that perhaps goes hand in hand with lack of awareness and funding.'

A significant minority of those who have been infected contracted the disease through blood transfusions, before effective screening procedures were introduced in September 1991. Emily is 52 and almost certainly contracted the disease from a miscarriage that involved a blood transfusion. She only found out she had the infection when blood she had donated was screened - she'd had no symptoms. 'I was shocked and scared, especially when I found out that my liver was quite badly damaged.'

A typical patient, however, will be a man (two men to every woman carry the virus - a similar ratio exists in IV drug use) in his late thirties/early forties, and he will have had the hepatitis C virus for upwards of 15 years as a result of injecting drugs from a shared needle. Martin is 44 and had no symptoms either when he was diagnosed with hepatitis C in 1996. 'I'd gone for an HIV test after unprotected sex, and during discussions about my lifestyle I explained that I had injected drugs a bit during the late 70s. They said I should test for hepatitis C as well, and the virus showed up in my blood. After a liver biopsy, I was referred for treatment.'

Five years ago, the only treatment for hepatitis C was interferon alpha, now known as 'mono therapy'. 'Response rates were disappointingly low, so the pressure to identify people who were infected wasn't so great because there wasn't a lot you could do for them anyway,' comments William Rosenberg.

Over the last five years, though, the ability to treat the disease has changed dramatically. 'We now have combination therapy - that is, interferon combined with an oral drug called ribavirin - that has doubled the cure rate to 40 to 50 per cent.'

A further breakthrough was reached last month when Schering Plough was granted a license for pegylated interferon for use in combination therapy. Pegylated interferon is a more powerful and effective interferon that is metabolised differently and so stays in the body for longer. Trials show that cure rates will now rise over 50 per cent... for those who can get it. Treatment currently costs around £11,000 for one year and pegylated interferon will cost slightly more (although 50 per cent of patients only need to be treated for six months). This isn't a lot of money when compared to the cost of, say, high blood pressure treatment for life, yet Rosenberg describes the availability of combination treatment as 'incredibly patchy'.

For people who do get treatment, ongoing counselling and professional support is considered vital if the patient is going to stick with the treatment. After a liver biopsy that showed inflammation to his liver, Martin was persuaded to start combination therapy last September. It made him feel dreadful. 'I felt like death within half a day. I had to inject myself with interferon three times a week, and once I'd been shown how to do it, I was very much left to deal with the side effects on my own. I wasn't working, thank God, because I wasn't able to. You get hepatitis C symptoms, which was an irony in my case because until then, I'd been symptom free. I felt like I had heavy flu all the time. I was constantly exhausted. But it was the depression that was really bad. I just lay in bed all the time and felt unbearably lonely. I had to self-administer a treatment that made me feel progressively worse, even though I'd never felt ill to start with. In the end, I wondered why I was doing it.'

Martin says he got almost no support emotionally or otherwise from the nurse who dealt with his treatment. 'I had to see her once a week and she was always disapproving and aggressive. She never asked how I felt, she just carried out the blood tests in the most perfunctory way. When, after five weeks, I told her that I was stopping the treatment because I couldn't bear it any more, she didn't suggest I see the doctor or encourage me to stick with it. She just said, "OK."' Martin says he will make an appointment to see his doctor again when he feels up to it.

Emily, meanwhile, says she got fantastic support from her GP and all the staff at St Mary's Hospital, where she was treated. 'I cleared the virus three years ago after a year of treatment. I was lucky; I didn't find the side effects that bad, but I know that isn't typical. Admittedly, I was tired all the time - I went to work and then straight home to bed mostly - but I didn't get depressed.' Angela Narbey sees successful adherence to what is by everyone's estimation a difficult treatment as very much dependent on a good support facility being in place.

In the next 10 years, William Rosenberg predicts that the workload for hepatologists is going to increase by roughly 40 per cent, 'as more people discover that they have the disease. Yet there has been no expansion of services to meet this need, and all of us in the field are currently working flat out anyway.' Dr Graham Foster, a consultant hepatologist at Imperial College School of Medicine, says that a real worry is that an awful lot of people don't yet know that they have this disease. 'We had a middle-aged woman with abdominal pain in the other week. It transpired that she had liver damage from contracting hepatitis C 20 to 30 years ago. And, increasingly, we are seeing people turn up with advanced hepatitis C who then die from cirrhosis and liver cancer.' Foster feels that hepatitis C is a viral time bomb and that 'each government seems to take the view that it won't explode in their time. We need a massive advertising campaign to raise awareness and for treatment to be immediately available for those who need it.'

A consultation paper commissioned by the Department of Health is currently being drawn up by a steering group of hepatitis C experts. A DOH spokesman said that it would make recommendations on prevention, control and treatment within a year. A member of the steering group told me that we shouldn't necessarily read this as a move towards effective action. 'It really depends what they do once they've got the document. A lot of consultation documents just end up sitting on a shelf. But let's give them the benefit of the doubt.' 

Names in the case studies have been changed

The facts about Hep C

 Hepatitis C is one of 40 new infectious diseases discovered since 1970, but it has been around for decades, if not centuries. Before1989, it was known as 'non-A, non-B hepatitis'.

 There is a minute risk of catching the disease from implements that can carry blood (razors, tattoo pens, toothbrushes, etc). It is also possible for mothers to pass it on to an unborn baby, and while it generally agreed that the risk of infection through sex is low, experts won't say that it is nonexistent.

 An estimated 400,000 people in the UK are infected. Yet a recent survey by St Mary's Hospital of 5,000 antenatal patients found that almost one in every 100 women carried the virus, which means that numbers could be as high as 500,000.

 Treatment isn't always successful and depends on the virus's 'geno type' or 'strain', but across the board 60 per cent of patients will be cured when pegylated interferon is available.

 Some patients have found both symptoms of the virus and side effects of the treatment to be greatly reduced by the use of Chinese herbs.

 One of the symptoms of hepatitis C is debilitating tiredness which has lead to it being mistakenly diagnosed as Chronic Fatigue Syndrome.